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Omgosh Dawn I would be in bed for a week if I did that! Lol put some clothes on girl! On a serious note, it truly does make me horribly ill to be uncovered now. It didn't used to. It stinks I'll tell you! But I'm old so its best to cover that stuff up anyway. Gives the illusion that you still look great!

Terry, Plaquenil was cutting your breath short!? Yikes. I'm glad you are doing better on it now. That sounds horrid.

Sun intolerance with age...food for thought, Loved. My back probably has more sun exposure than the rest of this forum put together :/ I prefer to dawn patrol (sunrise surf session) but lately have been going out mid morning. Im out there during peak sun hours. I wonder, lately I've also been feeling disconnected and unfocused. Is Plaquenil the culprit? Or part of some epileptic activity? I suppose I ought to talk to my rheumatologist and neurologist.

I have a rare seizure disorder called bilateral periventricular heterotopia. In the right frontal lobe there are nodules of gray brain matter where there should be white matter. Sometimes this creates the electrical activity to go haywire and I black out. A couple of months ago my neuro determined that the seizures were out of control and tripled one of my seizure meds-- I also got my 4th speeding ticket. lol. I love driving, love life. My neuro is deeply concerned. Good thing I didn't mention the skydiving...

Dawn,

It was horrid for me at the time but i still have the odd morning where i'm abit breathless and get my steriod inhaler and in no time i'm fine and i always sit outside first thing for my cuppa and fag and the air helps my lungs besides the heat off my joints.

I hate to say it my friend but i'd say the sun exposure is most likely doing the damage..it's the peak sun hours they're to much for your skin...i loved my canopy sunbed but that soon went on the selling list when i found out how bad my skin was, dawn it's not worth the risk mate besides all the irritation that follows and being uncomfortable.

Plaquenil does make me unfocused and out of it but with the seizures as well it will hit you more and you need to becareful if your seizure's make your electricity go haywire and blackout, i have that myself and it's dangerous and i'm not surprised you don't feel extremley sick to the extent to get indoors.
I must say your leading your life to the full and driving...they won't let me touch a motor.lol
You might love life i did until my seizures put a block on me at 18 and if your neuro is concerned you'll be surprised at what actions they're able to take if they think your lifes at harm with the seizures alone.

I did not realize that lupus flares can cause internal damage. That's a sobering thought. I'm glad to be here, I'm learning so much from you all.
I've got to get out in the water earlier. I'll work on covering up. I am turning another year older next week :x

On a lighter note..
I'm one of the organizers for a surf meet next year (these things take a lot of planning) and have managed to convince my sponsor to throw in a free shortboard, some shirts and junk. This is a special surf competition, however, as it is a benefit with a theme of Health Awareness. We decided to have a Lupus booth...

How Wonderful Dawn! So proud of you! Yes the sun is a very powerful force on our organs as well as systems. It's hard when you spend so much time in the sun. I drive almost all day visiting clients who want to get out of their houses into the sun (grin). I now slather myself with sunscreen carefully and cover with shirts, sunglasses, and yes a hat. That was a hard one to do, as I look goofy in most hats. However, I found a great hillbilly one that really suits me. Good luck with the lupus booth!

On a lighter note..
I'm one of the organizers for a surf meet next year (these things take a lot of planning) and have managed to convince my sponsor to throw in a free shortboard, some shirts and junk. This is a special surf competition, however, as it is a benefit with a theme of Health Awareness. We decided to have a Lupus booth...

Dawn,
That is very cool. I live on the coast of California, on the Monterey Bay. We love to sit in our favorite resaurant on the Santa Cruz Pier and watch the sufing competition when the Maverick competition comes to California. It's fun to watch.
Perhaps you can check with the Lupus Foundation and see if they can send you some printed information for your Lupus Booth?
Hugs,
Marla

I did not realize that lupus flares can cause internal damage. That's a sobering thought. I'm glad to be here, I'm learning so much from you all.
I've got to get out in the water earlier. I'll work on covering up. I am turning another year older next week :x

On a lighter note..
I'm one of the organizers for a surf meet next year (these things take a lot of planning) and have managed to convince my sponsor to throw in a free shortboard, some shirts and junk. This is a special surf competition, however, as it is a benefit with a theme of Health Awareness. We decided to have a Lupus booth...

Hi Dawn,

A large majority of the illness of Lupus comes from flares besides heat and i hope your learning from us...as sun exposure can cause you more damage then you realize i know your young and want to live life but we have so many young member's on the site who have realized and learnt what things can cause...so be very careful.

Now the light note...sounds alot better convincing your sponsor to support you in the way you need it properly and "Congratulations" on the Lupus Booth and i hope it really goes as a good success for you all.